I’m Living Proof That Effective Pain Management Can Heal

By Heather Grace

My journey into what would become debilitating pain began at age 19, when my neck was injured in a head-on collision caused by a drunk driver. Being a backseat passenger in an older car meant there were no headrests.

I healed as best I could after the accident with chiropractic care and exercise. I was young and told myself I’d be fine, but sensed I wasn’t quite the same as before.

Nearly a decade of work in the IT field worsened the severity of my injury, due to faulty ergonomics. Between the severe pain and the horrors of the workers compensation system, it began to feel like I was in free fall. At my first visit with a prominent pain management specialist, I was told, “Normal is out the window for you.”

It was the worst thing I’d ever heard, so I began sobbing. What he said wasn’t actually cruel, it was honest. He could see that my body was broken by work comp care that included two botched neurosurgeries and one spinal discectomy-fusion surgery that came far too late to be a good thing. 

I was left with intractable pain and nerve damage, which would be diagnosed as Complex Regional Pain Syndrome (CRPS) Type II. The CRPS is not regional at all, but spread to the whole body, thanks to the impact on my spinal column and brain.

I would later also learn that I was born with Ehlers-Danlos Syndrome, a progressive connective tissue disease.

HEATHER GRACE

Intractable Pain Syndrome (IPS) isn’t well understood in mainstream medicine because it’s not very common. In fact, even after working in Continuing Medical Education for 10 years, I’d never heard of IPS until I was diagnosed with it. I didn’t know that it was possible to be in severe unceasing pain.

People with IPS experience major health problems throughout their lives because of the physical and psychological toll that pain takes on the brain and body. Treatment for this complex and disabling condition must be taken seriously and done correctly.

A New Future

After all this was explained to me by my doctor, I realized that to move forward with my life, I had to stop pinning my hopes on returning someday to “normal.” I had to grieve the loss of my former life. Once I did, a door was opened to a meaningful future for me.

Thanks to amazing treatment with a physician who also helped me focus on the future, I’m living again in a way I didn’t think was possible when I first sat down with my doctor in 2006. He found the right treatments for me, which included opioid pain medication.  

I’ve reduced my medication dose slowly over the years. I’m now taking less than one sixth the pain medication I started with. That’s because I’ve experienced neurogenesis, a form of healing in my nervous system.

It is possible for people like me to heal, albeit very slowly over time when they get the care that they need. Despite the severity of my conditions, I’m doing well. Contrary to popular opinion, patients who get the proper dose of pain meds don’t always require more and more medication. While some patients’ dosages stay the same, some of us are able to lower our doses when our health improves.  

I’ve come so far. In 2004, when I left the job I loved awaiting two major surgeries, I thought I’d never work again. But I was able to obtain a full-time job (with benefits!) in 2020. It required a major effort, but I got here because I had a good foundation of long-term effective pain management, which lessened the impact of pain on my overall wellness.

Opioid medication does not define my care, nor my life. Pain meds are merely a tool I’ve used to get well. Every patient should have access to individualized pain care with the treatment options that best work for them. It’s crucial for patients if they’re ever going to see their health improve.

I won’t lie, it’s been a struggle and I have had my share of setbacks too. Yet I know without question that pain medication was required in my case. It made a serious difference in my overall health and paved the way to my future too.  

Effective pain management for someone with IPS is as vital as care for any other serious illness. You’d never tell a diabetic that an arbitrary maximum dose of insulin was all they were allowed to have. Why are pain patients any different? None of us asked for the pain, nor do we like having to take a prescription drug that’s so socially maligned. These judgments exist nowhere outside of pain management. Why are people in pain treated so differently and with such suspicion?  

The fact is, when the CDC’s opioid prescribing guideline was released in 2016, the consequences were far-reaching and dire. Countless patients have needlessly suffered and died because they lost access to opioids or were tapered, based on the guideline’s recommendations. Many of those deaths have been due to the pain finally overtaking the body. Other patients have chosen to end their pain via suicide. Imagine being so ill that you were forced to make such a choice!  

Without access to effective individualized treatment by physicians whose options aren’t stifled by a system that doesn’t understand pain, many more people with serious diagnoses will develop intractable pain.

Those outside the treatment setting have no business undermining patients’ pain care protocols. They simply don’t have the knowledge to be involved on that level. That goes for the CDC, DEA, state medical boards and insurance companies — along with anyone else who gets in the way of pain patients having effective care. 

Sadly, I know it’s the workers compensation system that led to the severity of my illness. I got an extensive education on how an overburdened system not designed for people with serious healthcare needs can result in disability.  

Please don’t jeopardize the future of an entire branch of medicine any further. There are human lives on the line. Everyone knows someone living with chronic pain. Make the changes needed to continue treating people like me — people whose lives don’t have to end because they have a serious injury or illness. It’s crucial to roll back the damage done by the CDC guideline before we all lose access to pain management forever.

Heather Grace is a patient, advocate and member of For Grace’s Board of Governors. She’s worked for health-focused nonprofits most of her career & developed Continuing Medical Education (CME) for nearly a decade. Heather lives with Complex Regional Pain Syndrome II and the genetic condition Ehlers-Danlos Syndrome. Heather has a website on pain issues called Intractable Pain Journal.

Nearly Half of CBD Oils Are Mislabeled

By Pat Anson, PNN Editor

CBD oils derived from hemp are increasingly being used to relieve painful conditions. Studies have found the oils effective in treating migraines and fibromylagia, and recent research found that a proprietary blend of CBD oil helped relieve symptoms in 9 out of 10 people suffering from chronic pain.

But a new study at the University of Kentucky College of Medicine found that nearly half of the CBD oil products tested in a lab were mislabeled. Of the 80 CBD oils purchased online or in retail stores, only 43 had concentrations of cannabidiols that were within 10% of their label claims – an accuracy rate of just 54 percent.

One oil had a CBD concentration that was 159% higher than its label indicated. Another oil had only 17% of the CBD it was supposed to have.

“As most consumers are using CBD products as therapeutic treatments for some types of medical condition, the dosing is important when considering the potential for CBD accumulation, elevation of liver enzymes, and drug-drug interactions,” lead author Erin Johnson reported in the Journal of Cannabis Research.  

“The findings reported here emphasize the continued need for clear and consistent regulation from federal and state agencies to ensure label accuracy of CBD products and subsequent enforcement. These results also indicate the need for continued development of good manufacturing practices and testing standards.”

In a separate analysis of the same CBD oils, Johnson and her colleagues found that most contained trace amounts of THC (tetrahydrocannabinol), the psychoactive substance in cannabis. Five of the 21 CBD oils that were labeled "THC Free" contained detectable levels of THC.

"THC is not allowed at the Olympics. It's not allowed in many sports organizations. But athletes use CBD because it helps them recover, and it helps them with different facets of their training," co-author Shanna Babalonis said in a press release. "So I think that one of the key takeaways from this work is to say that the public needs to question whether there's THC in their CBD products."

The two studies are certainly not the first to find that cannabis products are often mislabeled. They point to a continuing problem since passage of the 2018 Farm Bill, which legalized hemp under federal law. Although hemp contains only trace amounts of THC, cannabis companies have found ways to tweak its chemical composition to produce concentrated levels of delta-8 THC, which has a mild psychoactive and intoxicating effect.

The FDA considers delta-8 THC to be an unapproved drug, but because it comes from hemp – a legal substance – its regulatory status is unclear. Recently, the FDA sent the first warning letters to five cannabis companies, not for mislabeling, but for making unsubstantiated medical claims about delta-8 THC.  

Until the FDA or individual states confront the widespread mislabeling of CBD products, industry insiders say it’s likely to continue. 

“The mislabeling of Delta-8 products is not surprising but is a result of poor quality controls that are present through the category. Delta 8 can be unsafe for people to use, especially if it not labeled. This is due to the psychoactive component of Delta 8,” said John McDonagh, CEO of CBD producer NextEvo Naturals.  

“Some states have started to regulate Delta 8 to take it off the market. The FDA is limited as it doesn’t have sufficient enforcement resources, so the best solution for now is for states to take action.”

Feds Warn Kratom Vendors About Marketing for Addiction Treatment

By Pat Anson, PNN Editor

The Food and Drug Administration and Federal Trade Commission have sent warning letters to four kratom vendors saying they are in violation of federal law for selling “unapproved new drugs.” The letters to Herbsen Botanicals, Klarity Kratom, Kratom Exchange and YoKratom primarily focus on their marketing of kratom as a treatment for opioid addiction.

Kratom is a dietary supplement that comes from the leaves of the mitragyna speciosa tree in southeast Asia, where it has been used for centuries as a natural stimulant and pain reliever. In recent years, millions of Americans have discovered kratom and use it to self-treat their pain, anxiety, depression and addiction. Kratom is sold legally in most U.S. states, but vendors can run into trouble if they claim it can be used to treat medical conditions.

“You market kratom products for the treatment or cure of opioid addiction and withdrawal symptoms. However, these products have not been determined by FDA to be safe and effective for these (or any other) uses,” the agencies said in their letter to Herbsen Botanicals. “Further, the unproven treatments could cause patients to forego or delay FDA-approved treatments for opioid addiction or withdrawal. The marketing and sale of unapproved opioid addiction treatment products is a potentially significant threat to the public health.”

The letter cites several blog posts on Herbsen’s website, which claim that kratom is a “common recommendation to manage opioid addiction” and “delivers similar effects” as morphine and codeine. Herbsen also has a lengthy disclaimer on its website saying such statements “are not intended to diagnose, treat, cure or prevent any disease or ailment.”

The FDA has tried for years -- unsuccessfully – to schedule kratom as a controlled substance, which would effectively ban its sale and use in the United States. Having failed to achieve that goal, the agency has resorted to occasional warning letters, import alerts and seizures of kratom.   

In a recently updated online fact sheet, the FDA said kratom’s effects on the brain are similar to morphine and that kratom has “properties that expose users to the risks of addiction, abuse, and dependence.”

‘Kratom Saved My Life’

Addiction treatment is one of the main reasons that people use kratom. In a large PNN survey of over 6,400 kratom users, about one in ten said they primarily used the plant to treat opioid addiction or alcoholism. Several said it was more effective than methadone or Suboxone in relieving withdrawal symptoms.

“Kratom saved my life. I tried every other type of treatment for drug addiction over the past 10 years,” one respondent wrote. “After 2 years of Suboxone, I stopped treatment & began using kratom. I've made more progress toward my ultimate goal of total sobriety in 2 years of self-administered kratom then 5+ years of suboxone & methadone treatment.”

“Due to 3 surgeries, I became hooked on Oxy and had to take Suboxone to get off it. The problem is Suboxone withdrawals were nearly as bad, so I used Kratom to cure that,” said another.

“Not only is this a wonderful alternative for people with chronic pain. but this also could greatly reduce our heroin epidemic crisis going on in our country. After years of being physically dependent on legally prescribed Suboxone, I was unsuccessful at my attempts to get off of them. Kratom made it possible, and I believe would help others trying to get off any opiates and live full and productive life,” another poster said.

In recent testimony before Congress, FDA commissioner Dr. Robert Califf warned that kratom was a harmful substance that has caused “real adverse events, real negative things that have happened to people.” Califf also said the agency may need new authority from Congress to regulate kratom and other supplements that are not “traditional drugs.”

Federal Judge Rejects Opioid ‘Public Nuisance’ Claims

By Pat Anson, PNN Editor

A federal judge in West Virginia has ruled that three major drug distributors did not fuel the opioid epidemic by shipping excessive amounts of opioid pain medication to pharmacies in Cabell County and the City of Huntington. According to one estimate, about 10% of people in the county are addicted to opioids.

“The opioid crisis has taken a considerable toll on the citizens of Cabell County and the City of Huntington. And while there is a natural tendency to assign blame in such cases, they must be decided not based on sympathy, but on the facts and the law,” Judge David Faber wrote in his 184-page ruling, which rejected claims that AmerisourceBergen, Cardinal Health and McKesson State acted in a way that made them a “public nuisance” under state law.

“To apply the law of public nuisance to the sale, marketing and distribution of products would invite litigation against any product with a known risk of harm, regardless of the benefits conferred on the public from proper use of the product,” the judge said. “The economic harm and social costs associated with these new causes of action are difficult to measure but would obviously be extensive. If suits of this nature were permitted any product that involves a risk of harm would be open to suit under a public nuisance theory regardless of whether the product were misused or mishandled.”

Judge Faber is the first federal judge to reject public nuisance claims in opioid litigation. State judges in California and Oklahoma made similar rulings last year.

The three drug distributors had previously agreed to multi-billion dollar settlements with dozens of states, but Cabell County chose not to be a part of those agreements, as did other counties in West Virginia, which has long been considered “ground zero” of the opioid epidemic.

“This case was always about holding these distributors accountable and providing our doctors, nurses, counselors, first responders and social workers with some of the resources needed to combat the opioid crisis. These companies were part of a powerful industry responsible for fueling the epidemic here in Huntington and across the country,” Huntington Mayor Steve Williams said in a statement.

Judge Faber acknowledged that prescription opioids were a “significant cause of drug overdose deaths” in Huntington and Cabell County. But he said the city and county failed to prove that drug distributors acted unlawfully or that the amount of opioids they shipped to pharmacies was unreasonable.

The three companies supplied retail pharmacies in Cabell County with over 51 million hydrocodone and oxycodone pills over an eight-year period. That works out to 67 pills annually for every man, woman and child in the county. It would be a month’s supply for a typical chronic pain patient, who might be prescribed 2 to 3 pills a day, depending on the dose and type of opioid.

“The volume of prescription opioids in Cabell/Huntington was determined by the good faith prescribing decisions of doctors in accordance with established medical standards,” Faber said. “Defendants shipped prescription opioid pills to licensed pharmacies so patients could access the medication they were prescribed.”

Public Health Problems   

Judge Faber also pointed out the poor state of public health in West Virginia, which has high rates of disability, arthritis, cancer, obesity and other health conditions that contribute to pain.

“The West Virginia population is relatively older and has relatively higher levels of obesity as well as a higher than average number of disabled persons, all of which tend to generate more needs for pain treatment,” Faber wrote. “Manual and physical labor is a significant component of the West Virginia economy and tends to generate more needs for pain treatment.”

In 2018, West Virginia became one of the first states in the country to impose hard limits on opioid prescribing, limiting first-time opioid prescriptions to 7 days’ supply and requiring refilled opioid prescriptions to be limited to 30 days’ supply.  

Sixty-four weeks after the law was adopted, opioid prescriptions overall dropped by 22% in West Virginia, similar to how prescribing trends have changed nationally.  The reduced prescribing, however, has failed to reduce drug overdoses, which have risen to record levels.

According to a new CDC database, West Virginia has the second highest overdose rate in the country and leads the nation in drug deaths involving illicit fentanyl, prescription opioids, stimulants and methamphetamine. In 2020, only 5.2% of the overdose deaths in West Virginia involved a patient being treated for pain.   

A Pained Life: Tincture of Time

 By Carol Levy, PNN Columnist

“Tincture of time” is a medical maxim. Wait it out. Let's see what happens. Give it time. 

But when you have pain from trigeminal neuralgia, like I do, even a few seconds is too long to wait. Yet it takes time for pills to work. 

I don’t take my codeine prescription before the pain gets bad. I wait until the pain starts, then I take a pill. I hate taking codeine. It makes me feel awful, dry-mouthed and cloudy-headed. It takes about 15 to 20 minutes before it kicks in.  

Unless I let the pain get out of hand by continuing to do things that make it worse, I find my pain usually starts to calm down on its own, in about 20 minutes. The same amount of time it takes for the codeine to work. 

Maybe it's worth the wait. So many of us in pain are complaining, rightfully, that their doctors have reduced their meds or even stopped them completely. It's an awful situation, but one that may have some answers in the self-help column. 

When my pain starts, I no longer immediately head for the codeine bottle. I stop what I'm doing (which may not be possible for many of us), and wait the 20 minutes or so it would have taken for the codeine to help. And, thanks to tincture of time, I am better. Not always; but more often than not.

Tincture of time is one way for us to deal with the pain -- and simultaneously allows us to save pills for when the pain really does gets get out of hand.

It also has a downside. Many of us have lived with our pain for years or, like me, for decades. You get used to it, or as used to pain as one can get. I no longer talk about the pain unless I'm specifically asked about it. Then I usually just “pooh-pooh” it. I am so accustomed to pain that it is now a part of me. And I would rather not talk about it.

I do this with doctors. Any doctor that I see must know what my situation is, just by reading the names of the pain I have. They should know, so I don't make a big deal out of it. 

In that case, a tincture of time is harmful. I dismiss the pain even when I'm asking for help. They respond by not taking me seriously or thinking, “Well, her pain can't be that bad.”

Time can be an enemy or a friend. It may be the medicine we need or one that we need to ignore.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

Experimental Implant Uses Coolant to Numb Nerve Pain

By Pat Anson, PNN Editor

Applying ice on inflamed tissues and sore muscles is one of the oldest ways to relieve pain and promote healing.  Researchers at Northwestern University are taking that tried-and-true method a step further, with the development of a small, flexible implant that can alleviate pain by literally cooling nerves.

Researchers believe the experimental implant could be most beneficial to patients who undergo surgeries, nerve grafts or even amputations. Surgeons could implant the device during the procedure to help patients manage post-operative pain on demand without the use of drugs.

“As engineers, we are motivated by the idea of treating pain without drugs — in ways that can be turned on and off instantly, with user control over the intensity of relief,” says John Rogers, PhD, Professor of Materials Science and Engineering at Northwestern and lead author of a study published in the journal Science.

“The technology reported here exploits mechanisms that have some similarities to those that cause your fingers to feel numb when cold. Our implant allows that effect to be produced in a programmable way, directly and locally to targeted nerves, even those deep within surrounding soft tissues.”

In experiments on laboratory rats, Rogers and his colleagues demonstrated that the implants can rapidly cool peripheral nerves to relieve neuropathic pain.

As thick as a sheet of paper, at its widest point the implant is 5 millimeters wide – about the size of the eraser on a pencil. One end is curled into a cuff that can softly wrap around a nerve, without the need for sutures to hold it in place.

“If you think about soft tissues, fragile nerves and a body that’s in constant motion, any interfacing device must have the ability to flex, bend, twist and stretch easily and naturally,” said Rogers.

NORTHWESTERN UNIVERSITY

To induce cooling, the device contains tiny microfluid channels. One channel contains a liquid coolant (perfluoropentane), while a second channel contains dry nitrogen. When the liquid and gas flow into a shared chamber, a reaction occurs that causes the liquid to evaporate and cool. A tiny sensor in the implant monitors the temperature of the nerve to ensure that it’s not getting too cold, which could cause tissue damage.

“As you cool down a nerve, the signals that travel through the nerve become slower and slower — eventually stopping completely,” said coauthor Matthew MacEwan, PhD, from Washington University School of Medicine in St. Louis. “We are specifically targeting peripheral nerves, which connect your brain and your spinal cord to the rest of your body. These are the nerves that communicate sensory stimuli, including pain. By delivering a cooling effect to just one or two targeted nerves, we can effectively modulate pain signals in one specific region of the body.”

An external pump allows patients to remotely activate the implant and increase or decrease its intensity. Because the device is biocompatible and water-soluble, it will naturally dissolve and absorb into the body over the course of days or weeks — bypassing the need for surgical extraction.

Other cooling therapies have been tested experimentally, but have limitations. Instead of targeting specific nerves, they cool large areas of tissue, potentially leading to side effects such as tissue damage and inflammation.

“You don’t want to inadvertently cool other nerves or the tissues that are unrelated to the nerve transmitting the painful stimuli,” MacEwan said. “We want to block the pain signals, not the nerves that control motor function and enables you to use your hand, for example.”

Why ‘Song of Our Scars’ Is Out of Tune

By Janet Kozachek

Understanding a complex problem with a long history such as pain in all its permutations and treatments requires detailed and detached observation. In this respect, “The Song of Our Scars: The Untold Story of Pain by Haider Warraich, MD, falls short.

In his book, Warraich explores the cultural and medical history of pain, including his own after suffering a severe back injury. Although informative on the science of pain, the book contains some misleading information about ancient and modern history that seem designed to advance what appears to be a strident anti-opioid agenda.

Ironically, what benefitted me most in reading this book were the discoveries made in the pursuit of a fuller story, which revealed greater truths and richer vistas through fact checking. But this was a sad lesson on how popular literature reshapes history in order to serve a narrative. The instances of this are too numerous for this review, so a few examples will have to suffice.

In an earlier op-ed piece written in 2019 for The New York Times, Warraich portrays pain as an emotional sensation, a theme which would become his mainstay in subsequent publications, including Song of Our Scars:

"The ancient Greeks considered pain a passion — an emotion rather than a sensation like touch or smell. During the Dark Ages in Europe, pain was seen as a punishment for sins, a spiritual and emotional experience alleviated through prayers rather than prescriptions.”

The ancient Greeks had a rich vocabulary for the physical sensations of pain, as well as an understanding of emotional pain. A quick search through the ancient Greek lexicon reveals four words to describe pain in both mind and body:  penomai, algos, odyni, and pathos. Algos is the root word for algia, as in the physical pain caused by neuralgia. Pathos describes emotional pain.

The Greeks not only defined the types of pain, they had myriad treatments for it, including an early version of TENS units, in which they had people dip their feet into a bath of electric eels!

Many gods of classical antiquity are associated with the opium poppy plant. According to Warraich, the Greek god of death Thanatos is “depicted holding a wreath of poppies or wearing poppies on his head.” But in my perusal of classical Greek sculpture and vase painting, there are no images of Thanatos bearing or wearing poppies. He is usually depicted holding a butterfly, sword or torch while guiding the dead into the hereafter.

Warriach also claims that poppies are seen in the story of Demeter, “who overdoses on the milk of the poppy to induce anesthesia and forget the torment of having had her daughter (Persephone) raped and abducted by Hades.” In Greek mythology, Persephone is abducted and taken to the underworld, but I can find no references to Demeter self-medicating, let alone overdosing on anything.

Warriach’s understanding of Greek mythology appears to have been derived from a cartoon by a contemporary artist and Wiki-Fandom, an online community for fantasy lovers.

It was enlightening to become reacquainted with Greek myths. I had a similar experience while researching certain claims made in Song of Our Scars about Great Britain’s Opium War with China. Warriach wrote that “the sale of opium remained banned on British shores – unless the sale was to someone of Chinese or Indian origin.”

“The Opium Wars – The Addiction of One Empire and The Corruption of Another,” by W. Travis Hanes and Frank Sanello, says otherwise:

“For not all opium from India ended up in China: Three hundred chests a year were diverted to England with the same disastrous effects as in the middle kingdom... opium was the opiate of the underclass in England’s grim and grimy industrial cities, where workers on pay day lined up outside the chemist’s for the inexpensive palliative to their industrial hell at the reasonable price of one and two pennies per packet.”

Another interesting instance of fact tweaking occurs with regard to Dr. Hamilton Wright, an anti-opioid crusader who served as a U.S. special envoy to China in the early 1900’s. Warriach wrote this about Wright:

“His travels exposed him to the dangers of opium abuse around the world, imbuing in him a special zeal against the poppy... He told The New York Times that year that thousands of people were “slaves to the opium habit, about five-sixths of whom are white.”

But the original context in the 1908 Times article is missing, because Wright mentions specifically that six thousand opium addicts were in New York City.

This gem from the original article is also omitted:

“While Dr. Wright believes that nearly all the Chinese in the great cities are addicted more or less to the habit of smoking opium, not more than one third of them, take it to a harmful extent.”

Cherry picked facts like that in Song of Our Scars often coincide with amorphously defined data like this:

“Multiple studies show that women are more likely to be prescribed opioids, in higher doses, and for longer periods than men.” 

Research cited in Maya Dusenberry’s book, Doing Harm, show that women are actually less likely to be prescribed opioids than men. One explanation for the disparity may be that the studies cited by Warraich appear to rely on raw numbers rather than ratios and percentages.

Warraich does admit to this, which begs the question what his purpose is in bringing up gender differences. Was it an attempt to ascribe opioid addiction largely to women?  It would be wiser to consult the National Institute of Drug Abuse, which reports that addiction falls more heavily on men.

Misleading information like this leads to misunderstanding, which may in turn provoke inappropriate actions -- especially if a narrative is shaped by an agenda. Hopefully, this review may serve as a cautionary tale to read popular literature such as Song of Our Scars with a healthy dose of skepticism.

Janet Kozachek lives with a cluster of painful disorders.

She is an internationally trained and exhibited artist, and holds a Master of Fine Arts Degree in painting and drawing from Parsons School of Design in New York and a Certificate of graduate study from the Central Academy of Fine Art in Beijing.

Janet is the author of The Book of Marvelous Cats, My Women, My Monsters, and A Rendering of Soliloquies: Figures Painted in Spots of Time.

Another Look at the Opioid Risk Tool

By Dr. Lynn Webster

I'm a proud grandfather to two young granddaughters. They are my world. Watching the U.S. Supreme Court rescind women's right to decide what to do with their own bodies made me feel angry that my granddaughters will be subjected to dehumanizing discrimination.

This tyranny against women extends beyond the Supreme Court’s decision over Roe vs. Wade.

I have read multiple accounts of women who are being denied access to opioid medication because they acknowledge a history of toxic adverse experiences as children or adolescents. Many such instances have occurred after women completed the Opioid Risk Tool, a questionnaire that asks a person if they have a history of preadolescent sexual abuse.

The refusal to prescribe opioids to women with a history of preadolescent sexual abuse is a defensive measure by providers to avoid being accused of causing an Opioid Use Disorder (OUD).

Why I Developed the Opioid Risk Tool

The Opioid Risk Tool (ORT) that I developed more than 20 years ago was designed to assess the risk of someone who was prescribed opioids for chronic pain treatment showing aberrant drug-related behavior.

The ORT was a simple questionnaire that could be administered and scored in less than a minute. It was developed at a time when we had no way to assess the risk of developing opioid abuse in patients who were prescribed an opioid for non-cancer pain. We needed a tool to help evaluate whether the risk of potential harm from opioids outweighed the potential good for each individual.

I never intended for doctors to use the ORT to determine who should or shouldn’t be prescribed an opioid. My goal was to help doctors identify patients who might require more careful observation during treatment, not to deny the person access to opioids.

Since abuse and addiction are diagnosed by observing atypical behaviors, knowing which patients are at greatest risk for displaying those behaviors is useful in establishing appropriate levels of monitoring for abuse. This was intended to protect the patient from potential harm. It was never supposed to be used as an excuse to mistreat patients.

The original version of the ORT contained 10 questions, including whether a patient had a history of preadolescent sexual abuse. Women who answered "yes" scored 3 points; while men who responded affirmatively scored 0 points. The higher you scored, the more closely your doctor would need to monitor your opioid use during your treatment.

The ORT questionnaire was based on the best evidence at the time. Multiple studies have since confirmed the validity of the questions used in the questionnaire. However, many people have criticized the question that asks about a history of preadolescent sexual abuse because of a perceived gender inequity. In addition, some doctors have generalized the ORT's question about preadolescent trauma so that it applies to a history of female sexual abuse at all ages.

I have written that the ORT has been weaponized by doctors who are looking for a reason to deny patients -- particularly, women -- adequate pain medication.

There are doctors who use their power to determine whether to treat a woman's chronic pain with an opioid or allow her to suffer needlessly based on the ORT's answers. This is no less malevolent than a forced taper resulting in suicides or the use of the CDC opioid prescribing guideline to criminally charge providers for not following the CDC's recommendation. In all of these situations, an injustice is being committed against innocent people.

It is also not much different from the Supreme Court’s decision to ignore a woman’s right to access full reproductive rights. Both are attacks on women.

Fortunately, Martin Cheatle, PhD, and his team published a revised Opioid Risk Tool in the July 2019 edition of the Journal of Pain. In his research, Dr. Cheatle found that a revised ORT using 9 questions instead of 10 was as accurate as, if not better than, the original ORT in weighing the risk of patients for OUD. The revised ORT eliminates the use of a woman's sexual abuse history as a risk factor.

At a time when females have had their human rights taken away by a Supreme Court vote, it is especially appropriate to reconsider how we assess risks for potential opioid abuse for women.

It distresses me to know that, while the original ORT served to help assess the risk opioids posed for individuals, it has also caused harm. Since the question about a woman's sexual abuse history does not provide any additional benefit, there is no reason to retain it. The revised ORT should be used instead of the original ORT.

Lynn R. Webster, MD, is Senior Fellow at the Center for U.S. Policy (CUSP) and Chief Medical Officer of PainScript. He also consults with the pharamaceutical industry.

Lynn is the author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die. You can find him on Twitter: @LynnRWebsterMD.

 

What’s Missing in ‘Elvis’ Movie: The King’s Chronic Illness

By Pat Anson, PNN Editor

There’s a scene towards the end of the new “Elvis” movie when you know the end is coming soon. Presley, as depicted by actor Austin Butler, collapses in a hallway minutes before being scheduled to take the stage at the International Hotel in Las Vegas.

Instead of rushing an unconscious Elvis to a hospital, manager Tom Parker --- played by a surprisingly villainous Tom Hanks -- declares that the show must go on and summons “Dr. Nick” to make it right. After a quick injection of stimulant drugs, Elvis recovers just enough to sing, dance and entertain an adoring crowd in a packed showroom.   

That one scene sums up how the real Elvis Presley spent his final years before dying of an apparent heart attack in 1977 at the young age of 42. Popping pills. Slurring his words. Deeply depressed. And driven to continue performing by “Colonel” Parker and others.

“They really tried to push Elvis beyond his capacity in the last few years of his life. He was disabled,” says Dr. Forest Tennant, a retired physician and pain management expert who is one of the last people alive to be intimately familiar with Elvis’ drug use and medical problems.

In 1981, Tennant was hired by an attorney for Dr. George Nichopoulos (Dr. Nick), who faced criminal charges in Presley’s death. Tennant reviewed the autopsy report, medical records and a confidential 161-page private investigation, and testified as a defense witness for Nichopoulos, who would be acquitted of charges of overprescribing drugs.

After the trial, Tennant remained curious about Elvis’ medical problems and continued his research while treating people with intractable pain. The knowledge and experience Tennant gained in the last 50 years led to his recent book, appropriately titled “The Strange Medical Saga of Elvis Presley.”  

Elvis did indeed suffer from heart problems aggravated by an excessive use of drugs, but Tennant believes the ultimate cause of his death was a connective tissue disorder called Ehlers-Danlos syndrome (EDS), a major cause of intractable pain and other chronic health problems.

A diagnostic screening tool for EDS didn’t exist when Elvis was alive and few physicians were even aware of the condition. But Tennant thinks Presley had all the symptoms of EDS, including an unusual degree of flexibility and double jointness that allowed him to swing his hips and gyrate wildly. Those sexy dance moves helped make Elvis famous, but they also foretold what lay in store for him.

“EDS is a genetic connective tissue collagen disorder, and what that means is that you are genetically predetermined to have your collagen in certain tissues either disappear or deteriorate or become defective, and to put it bluntly, you can have a rectal problem and an eye problem at the same time due to the same cause because your collagen is deteriorating in these tissues,” Tennant told my colleague Donna Gregory Burch in a 2021 interview. “If you get a severe case like Elvis Presley, your life is going to be very miserable, and you're going to die young unless you get vigorous treatments.”      

The day before he died, a dentist gave Presley codeine for an aching tooth, not realizing how sick he was or that codeine could cause his heart to stop. Elvis collapsed in the bathroom 24 hours later. His sudden death led to rumors that he died from an overdose or even a horrible case of constipation. The truth is more complex.

“Nothing happened to Elvis Presley that we don't have a good logical, scientific explanation for now. But certainly back in those days we didn't,” Tennant explained. “Elvis Presley had multiple diseases. He was terribly ill, and he died accidentally in some ways with a dentist giving him codeine for his bad tooth, and his bad teeth were also part of the same disease that gave him a bad colon and a bad eye and a bad liver. They were all connected.

“He had all these metabolic defects due to his genetics, and so the codeine built up in his system. He had this terrible heart, so he died suddenly, within seconds, as he was trying to sit on the commode.”

Fortunately, the “Elvis” movie spares us any final scenes like that – ending instead with actual clips from one of Presley’s last concerts. They show a tired and very sick man, aged beyond his years and sweating profusely. But he still sang like “The King.”

All proceeds from sales of “The Strange Medical Saga of Elvis Presley” go the Tennant Foundation, which gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.

Supreme Court Rules in Favor of Doctors Appealing Opioid Convictions

By Pat Anson, PNN Editor

In a precedent setting case, the U.S. Supreme Court has ruled in favor of two doctors who were convicted of prescribing high doses of opioid pain medication outside the usual standard of medical care. The ruling could potentially impact dozens of past and future cases in which doctors are accused of “overprescribing” opioids to their patients.

In their combined appeals, lawyers for Dr. Xiulu Ruan and Dr. Shakeel Kahn argued that jurors were not properly instructed that doctors are allowed to prescribe opioids under the Controlled Substances Act (CSA), as long as they act in good faith and with a medical purpose.

Unlike recent rulings which saw the high court bitterly divided over abortion and gun control, the justices ruled unanimously 9 to 0 in favor of the doctors, with some quibbling over the legal reasons.

Writing for the majority, Justice Stephen Breyer said government prosecutors failed to “prove beyond a reasonable doubt that the defendant knowingly or intentionally acted in an unauthorized manner" under the CSA.

In a concurring opinion, Justice Samuel Alito drew a finer line, saying doctors could still be prosecuted under the CSA if they knowingly acted in a way “foreign to medicine — such as facilitating addiction or recreational drug abuse.”

The high court’s ruling does not overturn the convictions of Ruan and Kahn. Instead, the cases are remanded back to lower courts for review, where charges against the doctors could be dismissed or new trials ordered.

‘Monumental Decision’

Pain patients and their advocates cheered the high court ruling, saying it could have a sweeping impact on pain management in the United States. Fearing prosecution by the DEA or state medical boards, many doctors have stopped prescribing opioids, tapered patients to lower doses, or simply stopped treating pain.  

“This is a monumental decision that will literally save lives because fewer patients will be abandoned by their doctors for fear of losing their freedom,” said Lynn Webster, MD, a Senior Fellow at the Center for U.S. Policy (CUSP) and Chief Medical Officer of PainScript.  “Physicians have been afraid to prescribe controlled substances even with an appropriate indication for fear of a government expert testifying they believe it is not the standard of care.  

“The Court’s decision will affect not only Ruan and all healthcare professionals with authority to prescribe any controlled substances, but millions of patients now and in the decades to come.”  

"I would say (the ruling) directly challenges many past convictions of doctors that were tainted by improper instructions to juries or anti-opioid biases by judges,” said patient advocate Red Lawhern, PhD. “It may also make future convictions more difficult given that the decision forces DEA and other law enforcement authorities to demonstrate beyond reasonable doubt that prescribers knew their practices exceeded accepted medical standards." 

“There remain other issues to be decided, but this decision was the right one for pain physicians and patients.  It affirmed the higher standard for the government to prove doctors acted with criminal intent,” said Kristen Ogden, a patient advocate and caregiver for her husband, who is disabled by intractable pain.

Complicating the cases of Ruan and Kahn is that they were both convicted of crimes outside of the CSA.

Ruan, who practiced in Alabama, prescribed Subsys to many of his patients, an expensive and potent fentanyl spray that was only approved by the FDA for breakthrough cancer pain. Ruan was also convicted of taking kickbacks from Insys Therapeutics, the maker of Subsys. He was sentenced to 21 years in prison.    

Kahn, who practiced in Wyoming and Arizona, was convicted of prescribing excessive amounts of oxycodone and running a criminal enterprise that resulted in the death of a patient. He is serving a sentence of 25 years.

Why Some Drugs Work Better on Different Types of Pain

By Dr. Rebecca Seal and Dr. Benedict Alder

Without the ability to feel pain, life is more dangerous. To avoid injury, pain tells us to use a hammer more gently, wait for the soup to cool or put on gloves in a snowball fight. Those with rare inherited disorders that leave them without the ability to feel pain are unable to protect themselves from environmental threats, leading to broken bones, damaged skin, infections and ultimately a shorter life span.

In these contexts, pain is much more than a sensation: It is a protective call to action. But pain that is too intense or long-lasting can be debilitating. So how does modern medicine soften the call?

As a neurobiologist and an anesthesiologist who study pain, this is a question we and other researchers have tried to answer. Science’s understanding of how the body senses tissue damage and perceives it as pain has progressed tremendously over the past several years. It has become clear that there are multiple pathways that signal tissue damage to the brain and sound the pain alarm bell.

Interestingly, while the brain uses different pain signaling pathways depending on the type of damage, there is also redundancy to these pathways. Even more intriguing, these neural pathways morph and amplify signals in the case of chronic pain and pain caused by conditions affecting nerves themselves, even though the protective function of pain is no longer needed.

Painkillers work by tackling different parts of these pathways. Not every painkiller works for every type of pain, however. Because of the multitude and redundancy of pain pathways, a perfect painkiller is elusive. But in the meantime, understanding how existing painkillers work helps medical providers and patients use them for the best results.

Anti-Inflammatories

A bruise, sprain or broken bone from an injury all lead to tissue inflammation, an immune response that can lead to swelling and redness as the body tries to heal. Specialized nerve cells in the area of the injury called nociceptors sense the inflammatory chemicals the body produces and send pain signals to the brain.

Common over-the-counter anti-inflammatory painkillers work by decreasing inflammation in the injured area. These are particularly useful for musculoskeletal injuries or other pain problems caused by inflammation such as arthritis.

Nonsteroidal anti-inflammatories like ibuprofen (Advil, Motrin), naproxen (Aleve) and aspirin do this by blocking an enzyme called COX that plays a key role in a biochemical cascade that produces inflammatory chemicals. Blocking the cascade decreases the amount of inflammatory chemicals, and thereby reduces the pain signals sent to the brain.

While acetaminophen (Tylenol), also known as paracetamol, doesn’t reduce inflammation as NSAIDs do, it also inhibits COX enzymes and has similar pain-reducing effects. Prescription anti-inflammatory painkillers include other COX inhibitors, corticosteroids and, more recently, drugs that target and inactivate the inflammatory chemicals themselves. Aspirin and ibuprofen work by blocking the COX enzymes that play a key role in pain-causing processes.

Because inflammatory chemicals are involved in other important physiological functions beyond just sounding the pain alarm, medications that block them will have side effects and potential health risks, including irritating the stomach lining and affecting kidney function. Over-the-counter medications are generally safe if the directions on the bottle are followed strictly.

Corticosteroids like prednisone block the inflammatory cascade early on in the process, which is probably why they are so potent in reducing inflammation. However, because all the chemicals in the cascade are present in nearly every organ system, long-term use of steroids can pose many health risks that need to be discussed with a physician before starting a treatment plan.

Topical Medications

Many topical medications target nociceptors, the specialized nerves that detect tissue damage. Local anesthetics, like lidocaine, prevent these nerves from sending electrical signals to the brain.

The protein sensors on the tips of other sensory neurons in the skin are also targets for topical painkillers. Activating these proteins can elicit particular sensations that can lessen the pain by reducing the activity of the damage-sensing nerves, like the cooling sensation of menthol or the burning sensation of capsaicin.

Because these topical medications work on the tiny nerves in the skin, they are best used for pain directly affecting the skin. For example, a shingles infection can damage the nerves in the skin, causing them to become overactive and send persistent pain signals to the brain. Silencing those nerves with topical lidocaine or an overwhelming dose of capsaicin can reduce these pain signals.

Nerve Injury Medications

Nerve injuries, most commonly from arthritis and diabetes, can cause the pain-sensing part of the nervous system to become overactive. These injuries sound the pain alarm even in the absence of tissue damage. The best painkillers in these conditions are those that dampen that alarm.

Antiepileptic drugs, such as gabapentin (Neurontin), suppress the pain-sensing system by blocking electrical signaling in the nerves. However, gabapentin can also reduce nerve activity in other parts of the nervous system, potentially leading to sleepiness and confusion.

Antidepressants, such as duloxetine and nortriptyline, are thought to work by increasing certain neurotransmitters in the spinal cord and brain involved in regulating pain pathways. But they may also alter chemical signaling in the gastrointestinal tract, leading to an upset stomach.

All these medications are prescribed by doctors.

Opioids

Opioids are chemicals found or derived from the opium poppy. One of the earliest opioids, morphine, was purified in the 1800s. Since then, medical use of opioids has expanded to include many natural and synthetic derivatives of morphine with varying potency and duration. Some common examples include codeine, tramadol, hydrocodone, oxycodone, buprenorphine and fentanyl.

Opioids decrease pain by activating the body’s endorphin system. Endorphins are a type of opioid your body naturally produces that decreases incoming signals of injury and produces feelings of euphoria – the so-called “runner’s high.” Opioids simulate the effects of endorphins by acting on similar targets in the body.

While opioids can provide strong pain relief, they are not meant for long-term use because they are addictive.

Although opioids can decrease some types of acute pain, such as after surgery, musculoskeletal injuries like a broken leg or cancer pain, they are often ineffective for neuropathic injuries and chronic pain.

Because the body uses opioid receptors in other organ systems like the gastrointestinal tract and the lungs, side effects and risks include constipation and potentially fatal suppression of breathing. Prolonged use of opioids may also lead to tolerance, where more drug is required to get the same painkilling effect. This is why opioids can be addictive and are not intended for long-term use. All opioids are controlled substances and are carefully prescribed by doctors because of these side effects and risks.

Cannabinoids

Although cannabis has received a lot of attention for its potential medical uses, there isn’t sufficient evidence available to conclude that it can effectively treat pain. Since the use of cannabis is illegal at the federal level in the U.S., high-quality clinical research funded by the federal government has been lacking.

Researchers do know that the body naturally produces endocannabinoids, a form of the chemicals in cannabis, to decrease pain perception. Cannabinoids may also reduce inflammation. Given the lack of strong clinical evidence, physicians typically don’t recommend them over FDA-approved medications.

Matching Pain to Drug

While sounding the pain alarm is important for survival, dampening the klaxon when it’s too loud or unhelpful is sometimes necessary.

No existing medication can perfectly treat pain. Matching specific types of pain to drugs that target specific pathways can improve pain relief, but even then, medications can fail to work even for people with the same condition. More research that deepens the medical field’s understanding of the pain pathways and targets in the body can help lead to more effective treatments and improved pain management.

Rebecca Seal, PhD, is an Associate Professor of Neurobiology at University of Pittsburgh Health Sciences. Benedict Alter, MD, is an Assistant Professor of Anesthesiology and Perioperative Medicine, at University of Pittsburgh Health Sciences.

This article originally appeared in The Conservation and is republished with permission.

The Conversation

Overdose Crisis Projected to Grow Worse in Canada

By Pat Anson, PNN Editor

Opioid-related deaths reached a record level in Canada last year and are likely to continue rising in 2022, according to a grim new report from the Public Health Agency of Canada (PHAC).

The report estimates that 7,560 people died from opioid-related overdoses in 2021, and projects that number is likely to be surpassed this year. On average, there were 21 drug deaths daily in Canada in 2021, up from eight deaths only five years earlier.

The vast majority of the deaths were linked to illicit fentanyl, a potent synthetic opioid that was often combined with other substances. Men accounted for 74% of the deaths, most them between 20 and 59 years of age.

“For many years, Canada has seen a significant rise in opioid and other substance-related deaths and harms, and this crisis continued to worsen over the course of 2021, in the midst of the COVID-19 pandemic,” Drs. Theresa Tam and Jennifer Russell, co-chairs of a PHAC Special Advisory Committee on Opioid Overdoses, said in a joint statement.

“Additionally, the vast majority of opioid-related deaths continue to be accidental, and more than half also involved the use of a stimulant (e.g., cocaine, methamphetamine), underscoring the polysubstance nature of the overdose crisis.”

Notably, only 19 percent of the deaths involved opioids manufactured by a pharmaceutical company, although the data is not broken to determine if they were bought, stolen or obtained legally through a prescription.    

The latest updated modelling projections from PHAC suggest that opioid-related deaths in Canada are likely to remain high or even increase over the next six months. Under four different scenarios, researchers think the most likely one is “Scenario 2,” in which the level of fentanyl in the drug supply remains the same, contributing to about 4,000 more deaths in the last half of 2022.

Estimated Opioid-Related Deaths in Canada

Public Health Agency of Canada

“The data contained in this release underscore the seriousness of substance-related harms in Canada, and the urgent need to take further action to help prevent them. This includes the critical need to expand access to high quality, evidence-based and innovative care to support people who use drugs,” Tam and Russell said.

Canada recently announced an experimental program that will decriminalize drug possession in British Columbia, the province hardest hit by the overdose crisis. It has also allowed the creation of safe injection sites and made heroin available by prescription.

Like Canada, the U.S. saw a record number of overdoses last year, with nearly 108,000 drug deaths. Researchers at the University of Pittsburgh say overdoses are doubling every 10 years, fueled by multiple drugs, socioeconomic inequality and social isolation.

"There are theories, but nobody has an explanation for why drug overdose deaths so consistently stick to this exponential growth pattern,” said Hawre Jalal, MD, a former professor at Pitt Public Health who is now at the University of Ottawa. "Five years ago, leaders in the drug addiction and policy fields called our findings a coincidence. We need to stop denying that this exponential growth will continue if we don't get at the root causes and fix them."

Why Untreated Pain Can Lead to Violence

By Dr. David Hanscom

I spent the first eight years of my medical practice performing surgery for back pain. Seattle, Washington in 1986 was one of the most aggressive regions in the country regarding the indications for this operation. The reason for the surge was that we were introduced to newer technology that allowed us to attain a solid spinal fusion a higher percent of the time.

I was excited to be able to offer the option of surgery to my patients and felt badly if I could not find a reason to help someone out with an operation. I followed all my patients indefinitely and worked hard on optimizing the rehab. My results seemed okay, but were not close to what I wanted them to be.

Then the data came out in 1994 that the success rate two years after a spine fusion for low back pain in an injured worker was only about 30 percent. I immediately stopped doing the procedure, but did not know what else to offer. In the meantime, I began my own descent into severe pain.

During this period, I performed a one-level lumbar fusion for a young gentleman in his early 30’s. He had a work-related injury and was in pain and disabled for over 3 years. I worked with him for about 6 months to stabilize his medications, supervised his physical therapy, and recommended several back injections. I knew nothing about chronic pain and the implications of a sensitized nervous system.

After the operation, he was worse. I saw him every two to four weeks for over a year to do what I could to help him. He became increasingly frustrated, and his behavior became so aggressive, I had to dismiss him from care. He quickly assaulted his grandmother for money for meds. He then headed with a gun to Eastern Washington, where I was holding a satellite clinic.

“He’s coming after you with a gun,” a relative warned. We alerted the police and fortunately he never showed up. I never heard from him again.

Around this time, one of my spine partner’s patients begin to scream and yell in the middle of a full waiting room because he had a failed spine surgery and his disability had run out. He proceeded to pick up a potted plant and throw it across the room. Fortunately, no one was injured.

Spine Surgeon Killed

Dr. Preston Phillips was a spine surgeon who was shot and killed a few weeks ago in Tulsa, Oklahoma by a patient who was angry about his post-operative pain. Phillips was a colleague of mine in Seattle. I did not know him well, but interacted with him in conferences and some patient care. He was as nice a person as I have ever worked with.

It may be easy to blame Phillips for doing a surgery that apparently failed, but it is not his fault. His patient had chronic back pain and almost none of us in medicine are trained to treat it effectively, in spite of the data being right in front of us for decades. We are treating almost all symptoms and disease from a structural perspective, when most of them arise from the body’s physiological state of being in a sustained “flight or fight” response.

Phillips was doing what he was trained to do with the best of intentions. His patient was trapped in an endless cycle of pain and surgery is often viewed as the definitive answer. It requires enduring even more pain and anxiety, so the level of disappointment is even higher when surgery fails.

The Abyss

One afternoon, I was listening to a patient attempting to describe the depth of her suffering and it hit me how deep and hopeless this hole of chronic pain is for most people. I realized that words were inadequate to encapsulate their degree of misery. Since no one seemed to have any answers, there was no apparent way out. The description that seemed to fit for this dark, bottomless pit was “The Abyss.”

A 2007 research paper documented that the effect of chronic pain on one’s life is similar to the impact of having terminal cancer. With cancer, you at least know the diagnosis and that there is an endpoint, one way or the other.

Suffering from terminal cancer is horrible, but living with constant pain without a cure, treatment or endpoint is even worse. Here are just a few of the ways:

  • You have been told that there is nothing wrong and you have to live with your pain the best you can. The reality is that there is a physiological explanation for all of it.

  • You may have been given the diagnosis of “Medically Unexplained Symptoms.” This is simply not true based on the last 20 years of basic science research.

  • You are labeled by almost everyone, including the medical profession. The labels include drug seeker, malingerer, lazy, unmotivated, making things up, and not tough enough. The list is endless.

When you are trapped by anything, especially pain, your frustration and anger is deep and powerful. This scenario creates an even more intense flight or fight response. The blood supply to your brain shifts from the thinking center to the survival midbrain, and your behaviors may become irrational. There does not seem to be way out and you lose hope.

The literature also shows that pain is often worsened when surgery is performed in the presence of untreated chronic pain. I was also not aware of that data until after I quit my surgical practice. For Phillips’ patient to act out the way he did is unacceptable, but being trapped causes people to act irrationally.

Anger is not only destructive; it can be self-destructive. Suicide is problematic in patients suffering from relentless pain. For many, it seems to be the only way out. I was also at that point towards the end of my pain ordeal.

Physical therapy, chiropractic adjustments, injections, acupuncture, vocational retraining, medications, traction, inversion tables, and finally surgery. How many times can your expectations be dashed before you lose hope?

All the parties in the Tulsa shooting were victims of the business of medicine, and I put the blame squarely on its shoulders. Physicians are inadequately trained in chronic pain and data-based effective treatments are not usually covered by insurance. Physicians are often rushed, don’t have time to talk to patients, and their patients don’t feel heard. These are just some of the variables, but the energy is all aimed in the same direction: Money.

There are real solutions for your pain. Learning to calm and redirect your nervous system out of a threat state is a learned set of well-documented interventions. These techniques are not particularly profitable, but that is not the primary reason I went into medicine.

Both the medical profession and patients are going to have to demand a change in the paradigm of treating people. The first step being that you need to be heard and that takes time. It needs to happen soon.

David Hanscom, MD, is a retired spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

Hanscom has a website called The DOC Journey, in which he shares his own experience with chronic pain and offers patients a pathway out of mental and physical pain through mindful awareness and meditation.

He is the author of “Do You Really Need Spine Surgery?” and “Back in Control.

Kolodny Returns as PROP President

By Pat Anson, PNN Editor

After an eight-year hiatus, much of it spent testifying as a paid expert witness in opioid litigation trials, Andrew Kolodny, MD, has been reappointed as president of Physicians for Responsible Opioid Prescribing (PROP), the anti-opioid activist group that he founded. Kolodny succeeds Dr. Jane Ballantyne, who remains with the organization as VP for Clinical Affairs.

“I am delighted to serve in this role again, especially at a time when the need for more cautious opioid prescribing in the United States and abroad is becoming increasingly clear to clinicians, policymakers and the public,” Kolodny said in a press release.

Kolodny served as PROP’s first president from 2010 until 2014, when he was Chief Medical Officer at Phoenix House, a nationwide chain of addiction treatment centers. He is currently the Medical Director of Opioid Policy Research at Brandeis University.

Although Kolodny is a psychiatrist with a background in addiction treatment and lacks expertise in pain management, he has played a prominent role in reducing the use of opioids to treat pain. He lobbied Congress and federal health agencies for years to limit opioid prescribing, and is often quoted making sensational anti-opioid comments in the media, calling them “heroin pills” or saying that over-the counter drugs like ibuprofen “are as effective and in some cases more effective than opioids.”   

He stopped talking to this reporter years ago, saying he doesn’t like my questions and hasn’t had “a good experience” answering them.

Paid Expert Witness

Kolodny’s reinstatement as PROP’s president comes at a time when many opioid litigation cases are wrapping up against drug manufacturers and distributors, resulting in multi-billion dollar settlements with states, cities and counties. The plaintiff law firms who filed and pursued those cases stand to make billions of dollars themselves in contingency fees.

Kolodny was a paid expert witness or consultant for at least four of those law firms (Motley Rice, Nix Patterson, Cohen Milstein and Scott & Scott), making as much as $500,000 when he testified at a rate of $725 an hour in Oklahoma’s lawsuit against Johnson & Johnson.

That case, which resulted in a $425 million verdict against the drug maker, was overturned last year by Oklahoma’s Supreme Court, which ruled that J&J was not the “public nuisance” that Kolodny and the state attorney general portrayed it to be.  

A similar ruling was made by a California judge, who said opioid manufacturers did not use deceptive marketing and were not liable for the state’s opioid crisis. Dr. Anna Lembke, a Stanford psychiatrist and PROP board member, testified as a paid witness for plaintiffs in that case, but Judge Peter Wilson said her testimony about opioid addiction was unreliable.

DR. ANDREW KOLODNY

Court records show that Lembke was paid up to $800 an hour for her testimony in a New York opioid litigation case.

Public records also show that Kolodny was hired as an “expert consultant” by at least one state. In 2020, he signed a contract with the New York State Department of Financial Services to provide “consultation on medical issues and trends regarding the prescription of opioids” at a rate of $600 an hour. In one invoice, Kolodny billed the state $1,500 for making two phone calls. The maximum amount to be paid to Kolodny was later set at $174,999.

In addition to Kolodny and Lembke, at least five other PROP board members have testified as paid expert witnesses or consultants in opioid litigation: Ballantyne, Dr. Danesh Mazloomdoost, Dr. Adriane Fugh-Berman, Dr. Mark Sullivan and Dr. David Juurlink. Mazloomdoost was paid a rate of $850 an hour for his testimony.

PROP members have failed on repeated occasions to disclose these business relationships, but when questions were raised about them, they filed revised conflict of interest statements — without providing details on who they worked for or the amount they were paid.

PROP itself has not been transparent about its finances. PROP is not a public charity and has never filed a tax return. It takes advantage of a loophole in IRS law by having the Steve Rummler Hope Foundation as its “fiscal sponsor,” which allows donors to make tax-deductible donations anonymously.

PROP says it does not accept funding from “pharmaceutical companies and other life sciences corporations.” Kat Marriott, PROP’s Executive Director, did not respond to an email asking if the organization accepted money from law firms, medical device makers, drug testing companies or other industries that have profited from the opioid crisis.  

(Update: This story contains several updates relating to PROP members working as paid expert witnesses and consultants in opioid litigation cases. )

Advocacy and Awareness Should Promote Healing, Not Division

By Mia Maysack, PNN Columnist

June is Migraine and Headache Awareness Month in the United States. This year’s theme is “Advocate for Access.” 

Although I understand the intent behind awareness months, to those of us who truly live with a non-stop condition, they can border on being a tad mundane. Especially when the execution of the awareness itself does very little to propel us forward in any meaningful way.

I live with deeply rooted and untreatable nerve damage from an incurable traumatic brain injury. Bacterial meningitis almost claimed my life as a child. My brain swelled up and still feels pained and swollen even now -- the very definition of intractable pain.  Because migraines are literally my each and every day reality, I'm sick and tired of focusing on or talking about them. 

From what I've witnessed, awareness campaigns are often a repetition of the same conversations, among the same people and within the same circles. We as "migraineurs" don't need to continuously hear about what we already know. In my opinion, it's an unnecessary use of precious energy and the impact doesn't go as far as it could. 

The "pain community" generally seems less of a community and more like a clique -- a repeated line up of only certain people’s voices being heard and a select few being invited to participate in events.  

It gets even worse than that:  I recall emerging onto the pain scene out of an absolute last resort. I jumped head first into involvement with every organization I could find and joined several support groups out of sheer desperation. One day, a routine migraine treatment with Botox went horribly awry -- to the point I still deal with the repercussions to this day. 

I immediately logged on to share this experience, not in an attempt to scare anyone but to raise awareness and hopefully assist in others not encountering the same thing I did. I hoped for some compassionate empathy but what I received was the exact opposite. 

I was torn to shreds online by keyboard warriors claiming not to feel well enough to physically function, but clearly energized to the point of dragging me down. Before I was given a chance to clarify or further explain, I was muted by administrators. This felt violent, uncalled for and oppressive. I was bullied and shunned at a point in time I couldn’t afford to be. 

These very same individuals have the audacity and nerve to schedule days of remembrance for those who could no longer accept or deal with their pain, while simultaneously playing an active role in pushing people over their edge, probably without even caring or realizing it. 

I view it as a sickness, that a person would demand and expect consideration and respect when they don't demonstrate or possess it for others. It's a contest of underlying comparison as well as competitive victimization: I've hurt longer than you, worse than you, my life has been harder than yours, and no one else's life is as bad as mine.  

Is that really a game you want to win? How could one ever expect to feel better with a fixation like that? 

I've come to realize that many who claim to want improvement aren't truly committed to it. It takes work, a retraining of our minds and an entirely new approach to not only how we care for ourselves, but how we care for others.  

This questionable code of conduct is an illness in itself. The resistance to actual improvement is in part what's keeping members of these groups sick -- not to mention the fact that some remain utterly attached to their conditions to the point they're unsure of any identity outside of them. If those they so faithfully follow were truly interested in the well-being of their devoted followers, they'd be attempting to shine a light on the darkness as opposed to benefiting or profiting from it. 

I remained quiet on this for a long time, but one thing about my advocacy is that it’s real. Some people love that and others hate it. I’m not afraid to burn bridges, especially the ones that I built. In case you haven’t noticed, the whole world is hurting and the healing of our planet is what matters. Not just you and your cause.   

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.